You know what they say?

Fourth try’s a charm.

Thank you to my homegirl Terri for being a blood retrieval Goddess 🙌🏼🙌🏼

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‘Everybody Is A Book Of Blood; Wherever We’re Opened, We’re Red.’ Clive Barker

Today sucked

Hard

I arranged to have one of the Bayshore nurses come to my parents house to do my monthly bloodwork

Since I skipped last month

I was nervous before the day started

But I went with it

The nurse got here

I did the same old pee in the plastic cup song and dance

And then sat in a recliner to get it over with

I told her I usually have it taken from my hand

And that I have anxiety related to it

She was kind and all that

I didn’t have my rubber ball to pump to get the vein ready and blood flowing

But I tried other methods

She got the vein on the first try

I breathed a sigh of a relief

After the initial painful puncture

And then…

No blood

No blood came out

She tried a few times to get it flowing

Nada

She tried a different vein on the same hand

I pumped my hand manically

She got the vein

And still

No blood

I asked her to try my other hand

I was pretty shaky, sweaty and anxious at this point

She inserted the needle

And

No fucking blood

She said

I literally have the needle in your vein and nothing is coming out

We gave up

She recommended I try to go to my regular lab and see my usual homegirl

But of course

Because of my panic and near agoraphobia

I had been trying to avoid that

She left

With her empty vials

Apologies

Used needles

And unfulfilled lab requisition

I was left with my urine sample sitting on my mother’s coffee table in her living room

There wasn’t any point in sending it in without the blood

Three track marks and I’m sure ugly bruises to follow

I pulled my knees up and just started sobbing

I broke my no-crying-for-three-days record

Feeling sorry for myself

Everything is always so damn hard

Nothing seems to come easy

And yet

After all of that

I didn’t have a panic attack

Even pre crisis

A day like today would have likely made me have a panic attack

But today

Through the punctures, the pain, the discomfort, the crumbled hope and the anxiety

I didn’t have a panic attack

That’s my silver lining on this shit-tastic day

“We looked for the easiest way out: a separate reality.” ― Paulo Coelho, Veronika Decides to Die

My hair is falling out

My eyes hurt

And I’m trying to remind myself why I did this fucking treatment

This weekend passed by in fits of long naps

When I’ve been awake, I feel tired and irritated

This is the stuff no one tells you about chronic illness and the shit you do to your body to ‘get better’

I’m almost two months post Round 2

I did my blood work

With much greater ease

The first month of the next five years

There’s so many thoughts rumbling around in my head

And even trying to make sense of them in writing isn’t doing the trick

I went to the optometrist and while my vision hasn’t gotten worse she was concerned over my eye pressure and appearance of optic nerve

She said it didn’t have anything to do with my optic neuritis episodes

Glaucoma?

Being sent to ophthalmologist for more tests

I went to the group again on Friday

The topic was the difficulty in decision making

Funny since I’m struggling with this long term disability decision

I came home feeling understood

Something that’s always evaded me

It was a wonderful feeling

That I’m trying to hold onto

But it’s just out of my grip

Like the Banksy art on my arm

I’m reaching for it but it’s just passed my reach

MS and the world around me

I went to my first MS support group on Friday

It took me five years after being diagnosed to take the plunge

I was always hesitant to go

I was afraid of what my future might look like

It was a small group of 8 people

With different types of MS and in different stages of the disease

3 in the group had wheelchairs

A few had canes

Everyone welcomed me right away

The topic was ‘Why I’m glad I have MS’

I winced

Ugh this is gonna be brutal

We went around the table

Many described how having MS forced them to slow down

To reevaluate their life and priorities

To focus on the important and forget the small stuff

No one ignored the hard days

One described it as ‘the rabbit hole’

And seeing it open up

But not plunging into the darkness

They talked about fear, sadness,pain, love and hope

I sat quietly until my turn

And I spoke honestly

I told them I couldn’t find anything to feel glad of

Yet

And I couldn’t imagine a time when I would

But I was grateful for the resource of a group such as theirs

I explained to them how I thought I’d finally accepted having MS

Only to realize that I only was acknowledging having it

Acceptance was still a long way off

It still is

I talked about how I was going through a particularly dark time

I told them I was having difficulty reconciling my current life with what I thought my life would look like at 36 years old

I looked around

They were nodding their heads

I didn’t see the same sympathy that I see so often in my friends and families eyes

I saw real understanding

The kind that only someone who’s been there can provide

And I realized it’s been five long years since diagnosis and I’ve been doing this all wrong

I’d chosen to go at this alone

Seeing other 36 year olds living their life

Other 36 years who don’t have MS

And comparing my life to theirs

And coming up short every single time

The people in this group weren’t sad and pathetic

They were living their lives

Enjoying their lives

Maybe they adapted their lives to work around having MS

Maybe their life plans changed

But they didn’t stop living

That’s true acceptance

After I left

I felt a sense of relief

At having done something I’d put off for so long

I also felt hopeful

For the first time in a very long time

Not hopeful for a cure

Or that tomorrow I’d wake up without MS

But that one day I too would be able to finally accept that I have MS

With all that it includes and with wherever it might lead me

And I’ll be okay

I’m not there

Yet

Not even close

But I want to be…

One May Have Good Eyes Yet See Nothing

I started to write an update as it’s been two weeks since my last infusion day…

But everything seemed so trivial when I saw it typed in front of me

There’s so much that I want to say and yet it doesn’t feel like it would amount to much

So I’ll make this brief and say the only thing I’ve really been wanting to say:

I’ve been watching TV like all day every day

The bingeing kind of TV watching

The kind I’ve been unable to do in so long

And I was scared to say this aloud or type it out

But fuck it it’s my blog after all

My eyes don’t hurt

I’ll say it again for the people at the back

MY FUCKING EYES DON’T HURT!

I can’t remember a time when they didn’t hurt

It’s been that long

How crazy is it that I can barely remember the before MS version of me

I’m not foolish enough to think this is permanent

But for now I’ll relish in this moment

Temporary and short lived or not

And if it all comes back in the blink of my eye…

Write. Write until it stops hurting.’

-Anais Nin

A bruise by any other name

A bruise is like a badge

You’re not just handed one

You earn your bruises just like a badge

A bruise means you showed up

It signifies that you actually ‘did’ something for a change

That bruise carries with it the same honour as a trophy raised above your head

It says ‘hey world this might not mean anything to you but to me it means everything

Your bruise is one of a collection of bruises and scars

They are proof

In the flesh

That you’re real

That your battle is real

It’s evidence that you are still here

Inhabiting this world

This universe that you’re a part of

Left it’s mark on you

And you are treasuring it

Like the beautiful reminder that it is

Watching the marks build up

With a sense of awe

At what you’ve accomplished

In this life

Stretched out in front of you

Like a winners banquet

These bruises of mine

Look like victory

Hi my name is Angela and it’s been one week since my last infusion…

It’s been up and down

Steroids really fuck with my entire system

Most of the physical side effects have dissipated

Left over is irritability

More so than usual that is

I don’t know how last time around I spent an entire month in isolation

I’m seriously going mad inside

I’ve watched shows, played around with my hair, cleaned, planted some herbs on my terrace and slept

And thought

A lot

I’ve been thinking about what’s next with work, how the kids are doing, if this treatment will work, the upcoming Paxil withdrawal, how they really do get the caramel in the caramilk bar

And the list goes on and on and on

I’m not gonna lie

The Paxil thing has been at the forefront

I have been totally obsessing over it

I’m terrified

But that’s another blog entry altogether

Right now

I’m trying to make it to two weeks post treatment

And then I will rejoin the world

If it’ll still have me of course

Which has always been debatable

At best

Like me

Temperamental

At best